October Celebrations!

It’s been a busy few weeks in our (sooner to be) inclusive home!

Not only was it the half term holiday from school and nursery (seems to have come around V quickly since the summer holidays!), we also had….

1 x wedding anniversary! = a yummy grown up meal out!

2 x children’s birthdays! = one outing with the grandparents to the beautiful gardens at Ickworth House National Trust and one halloween craft party with the kid’s cousins and the neighbour’s kids – eek!

2 x more family birthdays …. and…

…. my 2nd blog anniversary!

img_5605Quite how I managed to set up and publish my first post in such a busy fortnight two years ago I’ve absolutely no idea!!

By lovely coincidence we had surprise cause for extra celebration just before my blog anniversary our planning permission for the adaptations came through several days earlier than we expected the decision!  Very exciting! We can get on and get started, after all we’ve only been talking about it for two years 😉

I know the disabled adaptations process can be slow, but I would like to make it very clear that in this instance it’s entirely our own fault that it’s taken this long! Day to day life, work, a minor disagreement on the shape of the roof of the extension (a result of having 2 designers in the house!) and getting distracted with other projects (including this blog – oops!) has sort of interrupted actually getting on with the drawings and submitting the application!

I’d like to do a more detailed project update blog post in the next week or so (now that we have the official go ahead!) but I’ll try not to let that distract me too much form the actual project!!

We MUST try and get those detailed drawings started asap and keep up the momentum to achieving our inclusive home!



A couple of weekends ago was a big first for me! I spent a whole day and an entire night in a new city without my family! And everyone was ok – not just ok, we all enjoyed it – woo hoo!

Papers from SWAN Bloggers workshopIt was a fab weekend.  The first (hopefully of more to come!) workshop of SWAN UK parent bloggers.  We were there primarily to discuss the upcoming Undiagnosed Children’s Day (UCD), on 29th April, but also to talk about all things blog and social media and how to spread the word about living without a diagnosis, how that affects children, their families, access to health services, education and social care.  With the very lovely bonus that I got to meet a bunch of amazing, determined, funny, normal and unique blogging women! – in real 3D life! – and those of us staying overnight took the opportunity to go out for a lovely meal, a chat (and of course a few glasses of vino blanco!)!

It was so funny to be out and about without my little ones, while talking a lot about them! I had to stop my auto-pilot manoeuvre, when sitting down at the table, to move all the cutlery and glasses out of Twinkle’s reach!

The workshop was really great, the fab SWAN coordinators were totally on it, and as well coming up with lots of exciting ideas for UCD that we can work on collectively, it has left me energised and ready to get writing more for my own blog and given me ideas that I can transfer to some of my own ‘campaigns’!

An aside to the day for me was that, after noticing a flurry of people asking about house adaptations on the SWAN parent forum, I put it out there to the bloggers attending the workshop that I’d be happy to have a chat over lunch or dinner about accessible design and the grant process. It’s pretty telling about the state of the DFG (Disabilities Facilities Grant) process, that out of the 11 people due to attend the workshop (excluding me, another designer & the SWAN reps!), FIVE (yes 5!, almost 50%!) of them I’ve either talked to in the past, or they wanted to talk to me on the day about adaptations!

I would love to be able to give more helpful advice about the actual grant process, but much as I’ve tried to actually understand the system, the more I read, or am told, the more confusing it seems to get!  The first thing seems to be that although there is a core national critera, each county appears to have different ‘rules’ about the detail, and finding those rules…..hmm, Franz Kafka springs to mind!

Laptop showing house planOur own experience has, so far, been good.  Our OT has been great and the slow progress is mostly our own fault as we have opted to take control of the reigns, do our own drawings, planning application and to administer the construction work.  However this is my ‘day job’ (or was until I had the kids!), so I’m confident about doing this.  Most people don’t have past experience of building projects and have to rely on the advice & services given by the local authority, which as I say, seems to differ greatly from county to county and doesn’t appear (ever?) to include any architectural design advice!

Many of my friends are telling me that the advice they have been given may improve accessibility in specific ways, but also compromises their homes in other, more fundamental ways.  With the grant (understandably) being a limited sum, it so often doesn’t cover the work required, so people are having to look into borrowing more, to do work that will help in some ways but will ‘devalue’ their houses, leaving them stretched financially and potentially in a worse position if they have to sell and move home.  A few have just opted out completely and are struggling on with no accessibility improvements.

I’m re-energised to try and get a message to those who can make a difference in this process.  A more cohesive grant process is needed, a more holistic attitude to the house and family and a long term sustainable view.

I’m compiling a to do list to start ‘shouting’ more loudly about this issue.  Of course, if there were more homes built to inclusive design and accessibility standards, people would have the option to move house, but there’s not – there’s really little or no choice in most areas!

First on my list I think is to start gathering case studies and survey experiences to try and demonstrate where and why improvements are needed!

So….who want’s to tell me their story!?

grant application approved!

We’ve had some great news for our house project!

Our application for DFG (Disabled Facilities Grant) funding has been approved by the panel!

It comes with slightly mixed emotions, as the feedback was that the panel deemed it quite clear that Twinkle’s needs require us to make significant changes to our house, which will most likely take us over the maximum grant limit. Of course we know Twinkle has additional needs and has impaired mobility, but living day to day you sort of forget!  Our life with Twinkle is just ‘our normal’ and it does still take me aback on the occasions when, without much question, our little girl is slotted neatly into a ‘disabled’ category by others.

IMG_2754However this is very good news for us! Needing so much intervention means that the OT & surveyor are now in a position agree the proposals with us without having to return to panel. This, along with partial self funding, gives us more flexibility within the design and planning and able to pursue our preference for ground floor living for Twinkle, with full (and hopefully independent!) access throughout.

So it’s out with our fat pens and tracing paper to look at our options for getting the best from our house (for Twinkle and the whole family!)….!

bye bye outside loo

In the spirit of getting things moving in the right direction, we organised to have our ramshackle old outbuilding demolished……

image-6 image

A little bit sad as the outbuilding was a remnant from the original victorian orchard cottage, and would have been the original coal shed and outside loo (which had been replaced with a working modern loo at some point!).  Unfortunately the building had already been partially demolished so the larger fruit store was already gone and the remaining structure was crumbling beyond saving.

However it’s very exciting to actually be able to see the garden from the house now!

feasibility visit

We had a visit from the council Surveyor and Occupational Therapist at the beginning of last week, to talk through the feasibility of adapting our home to meet Twinkle’s needs, and how we might access some funding through the DFG (Disabled Facilities Grant).

The OT is our daughter’s usual OT (although quite newly assigned), so already knows a bit about her, however this was our first meeting with the surveyor. He was very nice, friendly and open to discussion on possibilities and solutions – I’m not sure whether the fact that myself and my husband are both architectural designers was a good thing or not from his perspective! – but it did mean we were able to give him our survey drawings and were able to make the most of the meeting for discussing our needs and ideas rather than him spending part of the time measuring up!

Quite understandably it is part of the surveyors role to come to the most cost effective solution to meet the needs of the person. As a general rule they will try to avoid proposals that involve extending if possible, as extending is always going to be more costly than working within the existing building. However, in many cases, it is difficult not to compromise the house for the rest of the family if you have to ‘steal’ space from the existing house. We think we’ll opt for a compromise between partially funding with the DFG and partially self funding (well with the help of the bank!) to get the best out of the house.

One thing that came out of the meeting (and that I’ve seen mentioned in lots of posts in support forums) is that there seems to be a lot of focus within the DFG process on installation of vertical lifts. This is obviously a lifeline in many situations, especially in cases where the persons disability is permanent or degenerative, but (as in our case, and maybe more often when it’s a child) we don’t feel it’s always appropriate.

In our situation we feel we have two main options:

If Twinkle continues to sleep upstairs we need to:

  • make the ground floor fully accessible (including level access at the front door, level floor throughout, open out under the stair for wheelchair turning and storage and widen doorways),
  • build an extension to the bathroom upstairs to make it accessible
  • install a vertical lift

If Twinkle’s bedroom moves downstairs we need to:

  • make the ground floor fully accessible (including level access at the front door, level floor throughout, open out under the stair for wheelchair turning and storage and widen doorways),
  • build an extension to the cloakroom/utility to make into an accessible wet room/bathroom
  • build rear a extension to replace the living room which will become Twinkle’s bedroom

In either case we’d need to do the same amount of work to the ground level to make it accessible and the same size extension to either the bathroom or cloakroom to achieve an accessible bathroom. The difference being either the installation of a lift or building a new living room extension.

Although having Twinkle sleep on a different level to the rest of the family feels a bit strange, we feel that, for various reasons (emotional, practical & economic), concentrating our adaptations on the ground floor is the right thing for us, both now and in the future.

We don’t want to design in pessimism. I think some of the professionals think we are wishful thinking when we say we don’t want to rule out Twinkle being able to get up the stairs herself in the future. At the moment she’s light enough to carry and we will continue to carry her until it’s not feasible. However she beginning to move around on the floor and can stand up with support, and in the last few weeks she has been starting to take some steps – so we think there’s every chance she might be able to manage the stairs one day. In fact she’s just as likely to be able to climb the stairs as she will be able to operate a lift safely on her own! So we feel that for us it would be a waste of money and resources that we’d much rather spend on making the ground floor fully accessible to Twinkle, allowing her to be able to make her own way (whether that’s crawling or walking or in a wheelchair) from her own room, into the communal family area and to the bathroom/wet room – enabling her to be as indpendent as possible!

starting the process

This is going to be a weekend of planning for us! The start of the process of adapting our house – exciting but daunting too!


Our house is a Victorian cottage of a fairly standard layout. It needed a lot of TLC when we first bought it (it had no central heating system, a fetching pink and avocado 
bathroom suite and no fitted kitchen!).  As a couple of architectural designers this suited us perfectly, as we love a project! However at the time Twinkle was just a few months old and we had no idea about her neurological condition or how that would affect our future.  If we did, we would have made some different choices in the design.

It has been an emotional journey to get to this point too. Twinkle’s condition only very gradually revealed itself to us and it has taken time for us get into the mindset that we do actually have a disabled daughter and that does and will continue to have an impact on how she, and the rest of the family, can use our home.

We therefore find ourselves looking at grant funding for making some adaptations to allow our little Twinkle to join in fully with family life: https://www.gov.uk/disabled-facilities-grants/overview

Our lovely Occupational Therapist made her first assessment visit to the house a few weeks ago and we have a follow up visit, with both her and a building surveyor, on Monday. We are taking this weekend to arm ourselves with a strategy on how we’d like to progress the project.  We want to ensure that anything we do to improve accessibility now will be as flexible as possible for Twinkle’s ever changing needs (we are not ruling out the possibility that she may be able to get up the stairs under her own steam one day!) and we don’t want to scupper any further alteration options for our home in the future……….not to mention trying to keep things stylish (well as stylish as you can be with two small children and two dogs!)!